Friday, August 6, 2010

I have finally decided to get off of the ROLLER COASTER!

well, i had to call my doctor again today. i have to leave a voicemail with her nurse- as usual. the nurse called me back and said,"oh, you misunderstood what i said. the doctor is not going to call you back.she said things are fine- you can go back to work." i asked her about my blood work- the hospital faxed it to them for the third time. she said they had not received it and i could bring it to my next appointment at the end of September! enough is enough!! i think it is not being unreasonable to ask for 5-10 minutes to speak to my doctor and get my test results. and not just any test results, but probably some of the most important test results of my life! i wonder if my doctor even read the pathology report. as the radiologist told me, she ordered the wrong dose- too small. i am glad that he caught it. what if i had gotten too small of a dose, and then later on.....

my doctor is a very nice person, but i do not think she has enough experience dealing with thyroid cancer patients. so, i am going to drive to the hospital where i had the chest x-ray, full body scan, and the blood work done and get a copy of the results. i have to sign a consent form, and while i can look over the blood work( it will be in written form) my scan and x-rays will be on a CD. the technician said that the CD would not work in my home computer( i bet some people have tried that!) but really, i have no idea what i would be looking for anyway. i have made an appointment with my family doctor for August, 18th. i am going to talk to him about getting a referral to another doctor. i just have to find one that has dealt with thyroid cancer patients. " a thyroid cancer endocrinologist?" if there is such a thing.

you know, i have done exactly what the doctors told me to do. i have followed their instructions to the letter- the LID, thyrogen injections, tests,etc. i just expected a little of their time to explain the results to me. i do not think that is unreasonable. now that i have a plan of action, i feel somewhat better. of course, i will never feel completely at ease until SOMEBODY can go over my results with me, as well as explaining what i will need to do next. i believe, from reading in my thyroid cancer book, that i will need another full body scan in six months( that would put it about February,2011). then, if that is o.k. i think that the next scan comes in about a year? there seems to be quite a variation in this, from what i have read and heard. i wish i could tell everyone who has read my blog something definite. maybe this is just a reminder that every patient needs to be diligent in keeping in contact with their doctors, and not taking no for an answer. we all need to be informed and empowered-to the best of our abilities.

don't worry, i will keep everyone informed as to what happens with me. good luck to everyone who is going through this process( i hope you have a better experience than me!) and blessings to everyone who has had to go through this already. i am thankful to Mary Shomon for being a patient advocate, and for hosting her web site that informs and helps all thyroid patients.


  1. Bea, this experience is terrible. If you can not find a doctor you are happy with there is always md Anderson in houston. I just as we all do want you to be well.

  2. I am hurting for you tonight----this is terrible---I am hoping your family Dr can get some results for you....